At that first conference us teens did an exercise to help communicate and address the "white elephant" in the room. We were told to split into groups and write on a giant sticky note what we wished other people could understand. It was hard for me to do it at first because there was so much to say and I didn't want to sound like a complainer. But then when I heard what everyone else was saying and I realized it wasn't complaining. It was how I actually felt. And they understood how I felt. Leaving that first conference was really hard. I had so much fun spending time with people who get me. But I didn't leave that conference empty handed. I have since been more open about how I feel and all. I'm not going to lie, it's hard. Because most people don't understand. They think we are being over-dramatic or something. But it is true. These are some things on my list of what I wish those around me knew about my life... It isn't fun at all. Some think my life is perfect. Some think it's cool that i get to miss weeks of school at a time. But it's not. I wake up some days and am unable to walk out of bed. I'm not being lazy or over-dramatic. It is a legit problem. And it hurts both physically and emotionally. And then falling behind in school. It is a huge struggle. It is 10 times worse that what I say it is. The pain.... gosh. It really sucks. But I put on a brave face and smile through it because it's what I do. It isn't contagious. I don't know how many times I have had to say that because people are either ignorant or just don't listen. It isn't going to be given to you. Even if I could give it to someone else..... well I wouldn't wish it on my worst enemy. I don't look sick, but looks are deceiving. I am able to walk on some days, I don't let many people see me at my worst because of my pride. It isn't right but it's what I do. I am one step up from a wheel chair or a walker. But I am not faking it. Because nobody would want to fake what we go through. I don't know what it's like not to be in pain. I only know two types of pain. Bearable ad unbearable. I don't feel pain until it is a 15 on a 1-10 scale. Since i have been dealing with it for as long as I can remember I have grown used to the pain. So if I actually start to feel pain, don't you dare touch me. When we say we are in pain, don't try to one up us with tour shoulder popping or whatever. If you were in our shoes you would be in tears. Imagine having every joint in your body sprained or dislocated at the same time. That is how we feel on a good day. You don't get how I feel, it's ok. Especially when you are first finding out. It is a lot to take in. You don't have to say anything, and please don't down play it by comparing it to your broken arm from last year. That infuriates me because that means you either aren't listening to me or you don't care. Let your brain process the information before you talk about it to me. And this last one is the most important in my opinion. Don't treat me like a child. I may be limited, but I can still do stuff. Don't try to limit me more by carrying a box you think is too heavy for me. If I need help I will ask for it. Please let me have a little bit of freedom and independence. back - (Page 13) - next